I'm Disappointed

Discussion in 'Fibromyalgia Main Forum' started by Joanel, Aug 7, 2003.

  1. Joanel

    Joanel New Member

    I can see that this message board is only for a small group of people. Guess I don't qualify. Well, it was worth a try. Got what I expected. E.
  2. LeLeHpr

    LeLeHpr New Member

    Can you please elaborate? I have not been keeping up with the board. Are you okay?

  3. tjlibby

    tjlibby New Member

    You will add much to this board. What's going on in you life? Do you have fibro? Take care.. Teri
  4. cindye

    cindye New Member

    You sound like you are having a bad day - hang in there and don't give up on the board. I have found some very interesting information on this board - have been able to understand my daughter more. When you think you are the only one with this or that, if you post it, you will find out you are not the only one. For instance, my daughter is always feeling like she has a fever but when she takes her temp it is low - found out there are several others like this so it must be a trait of fibro. How long have you been diagnosed? Have you read Dr. St. Amand's book "What Your Doctor May Not Tell you abour Fibromyalgia"? This will help you understand what is happening. Hope you have a better day soon but don't go away. Hugs and prays are coming your way.
  5. TNhayley

    TNhayley New Member

    I've seen quite a few groups on the web, and this by far is the best, most informative one I've been involved in.

    It does move fast, sometimes things push off the first page in a very short time. I've found that I can't get to more than the first few pages in any given sitting.

    And, if nobody knows about your particular problem ... then, yes, you might not get a response. And, we are all dealing with CFS/FMS ... and the limits that these DD's impose. So, everybody contributes what he/she can.

    I hope you stick around. :) Hugs,
  6. Mikie

    Mikie Moderator

    Sounds like you could use it today. Stick around; this is one of the best places to learn about our illnesses.

    We have had a HUGE increase in new members lately and it is easy to get lost in the crowd, especially in the beginning. I have seen posts roll over to Page 2 or even Page 3 before anyone has a chance to answer them.

    One thing you can do is to bump your own posts if you see them rolling over too fast. Just reply to your own post and type "Bump" into the title and message boxes. This will bump it back up to the top.

    As someone already mentioned, controversial topics, emotional topics, polls, and issues of special interest will often get a lot of responses. For example: There is a small group of us here who are being treated for mycoplasma infections. Jellybelly, who is one of us, is the driving force in providing info on the latest in research on this topic. Often, her posts bring replies of thanks for providing new info or we start a dialog regarding the info itself. Sometimes, we just offer support as Jelly has had a very difficult time adjusting to her antibiotics. She has literally returned from death's door and I am not exagerating.

    I have gone from being bedridden most of the time and on Morphine to getting ready to look for a job as soon as I can get my infections and allergies under control. It is the Guaifenesin treatment which has helped me with my FMS symptoms (I also have CFIDS). There is a small group of us who are on the Guai treatment and offer support to one another and answer questions for people new to the treatment.

    What I am saying is that yes, there are some special interest topics here, but there is also a wealth of general info too. We have a library with more than 3,000 articles if you want to learn about your illness. If you find something there which you want to share with us, we would be very grateful.

    The people who have gotten better are the ones who have taken control of their own healing and work with their docs as partners. Every treatment which has helped me heal is one I have heard about here.

    I often post and get few responses and don't worry about it. If I think it's important, I will bump it. I hope you decide to stay as it will be the best thing you ever did for yourself.

    Love, Mikie
  7. elaine_p

    elaine_p New Member

    I think I've read most of your posts but I've never replied as I didn't have any answers for ya. Like most people here, I have a limited amount of energy and so usually only look at messages that might help me, or that I might be able to help with. (I think I bumped your med question one, but once I saw a post after it, I deleted the bump as it's just a waste of space.)

    Like your post on platelets. I think I have a high platelet count, but only because the Red Cross told me so and "recruited" me for platelet-pheresis. I have no idea what the numbers actually are and have never been on meds for it. I don't remember your other posts.

    I'm sometimes disappointed in the underwhelming response to some of my posts, but if I get one or two answers, that's all I can ask.

    Hope you don't give up on us yet--this is a great site for info and support!
  8. MissRachel

    MissRachel New Member

    HI joanel,

    I answered your post. I hope you stick around, this is a great site with tones of info and support.

    Welcome to the board,

  9. JP

    JP New Member

    I just read your profile. It sounds like you are in good company. FM is only part of my health concern. I keep coming back and have learned a great deal over the year that I have been around. I find that I respond more than I post these days. I am currently waiting on SSD and have posted a few times for support. The people on this site have been wonderful in so many ways, especially while I wait for the news. I never expected to be disabled at 42 with a graduate degree and 25 years of work experience. This is crazy stuff!

    Do come back, you will find others who are dealing with your concerns.

    Take care,
  10. Lana56

    Lana56 New Member

    Let us know what you are feeling.Everyone here is so helpful to eachother and hope we can be there for you.You can offewr a lot to us too.Take care and let us know more of what youi are talking about. Lana56
  11. MissRachel

    MissRachel New Member

    I just had to say that I have been on this board for about a month. I have only posted a couple of threads, but give my input when I can.

    Everyone here IS supportive. And in HiRiskRn situation I think that if you look at it from this angle - she had an overwhelming response, does that not show just how many people on this board DO care ? It is Her desision to take or leave what ever advice she's chooses (and yours too). We all make are own desisions and have own opinions.

    If you want to get the best treatment possible it is imparative to have a DR who beleives you and is willing to treat FM. You may not have the resourse but why would you waste your money or time on a DR who does not care? It's easy for me to say that becasue I live in Canada and get free health care (well not free - we a lot of tax over all).

    I have had few replies to some treads I started and if I wasn't satisfied or didn't get the info I was asking for I went and did a search on this site for the information. Chances are someone had asked the same question.

    We are all suffers and can be VERY sensitive. THere is no "click" here on this board - we all stand alone and hope that together we can find some answers.

    I hope you and Joanel decide to stay, the more people on the board the more we can help each other.

  12. Iggy_RN

    Iggy_RN New Member

    What I found for me that helped was to open up just a little and as my heart opened, others hearts opened as well. We are all in the same boat, Do not think that this board is a clique, open up and ask away, we all are here to care for each other and that DOES INCLUDE YOU!!!!!!!!Blessings and Love, Iggy
    PS. Please do not forget, that w/this DD, our moods can intensify w/pain and the frustration of no relief from our symptoms, I know mine are probably the worst moods here, one minute up and next null and void.... Iggy
    hugs to you girl..[This Message was Edited on 08/08/2003]
  13. tobyj

    tobyj New Member

    Everyone here is a caring, and understanding person. I just got on a week ago and everyone has been great. I will read your bio but don't give up on us. WE ALL CARE.
  14. spmary

    spmary New Member

    Hi joanel...Why are you disapointed? There are alot of people here. Some are shy and some too tired to type. But all loving and willing to listen, and to get to know you.So greet us and tell us all about yourself. I'm a little old white haired lady from the south..74 yrs. old and have had this dd for 13 yrs. Not much support from family and friends, although family do help out when they think about it. Friends don't seem to care,can't cut me any slack, but expect me to carry on as usual and I just have to smile sweetly and say "no, I can't help with that project right now."I don't bother to explain anymore. You will be fine. I get up in the morning, eat breakfast,rest about an hour, then do about half hour of house work, then rest again for anhour or so. Read or watch t v, and when have a little more energy go out to my studio and try to clean up so I can fine my supplies and get a little work done. I have no talent but have fun slapping some paint on a canvas lolMary
  15. Sunshyne1027

    Sunshyne1027 New Member

    I hope you don't go. Please respond soon, stay. I read your profile too. I think we can learn from each other, all of us. We all got something to offer.


  16. Dara

    Dara New Member

    much the same as you do. When I first found the board I felt like the new kid on the block also. Truthfully, there are times that I still do. So, I have to wonder is it me, am I being overly sensitive?? I don't know, but there is a lot of great information on the board and it does make it worthwhile staying. There are lots of times that I go through and read the posts but don't have the energy to respond, other times I do try and contribute. I do hope you will stay and find that you will enjoy the comraderie (i know I didn't spell that right), that will develop over time.

    I hope to see you back on board.

  17. IacheIache

    IacheIache New Member

    I so agree with what everyone has said in above posts.
    Have you gone to the "Chit Chat" area??
    That area, if you would like it, deals more with, I would say, personal stuff,ex: My husband just doesn't understand........... ect.ect.
    This FM/CFS board, more medical questions, answers.
    I had been watching and reading posts on this site for over a year before I got up the nerve to reply to anyone.
    So therefore I felt I new EVERYONE, BUT noone new me!!
    I started having big time problems, namely my dog June Bug,
    and decided to post. I got lots of answers, but then you know, theres those few that stick with you thru it to the end, asking and posting, you get to know them better.
    I found, getting more involved, being more vocal, with your thoughts and problems, helped, because if you don't ask
    Noone can know how to help!!
    The ppl on here are wonderful in my opinion, There is always someone willing to help. Give us a chance.
    There definately are circles of ppl, but start your own.Post your problem/thoughts, and stick with the ppl that answer you.
    If you havn't already, check out the Chit Chat area, thats where I did most of my venting. I'm sure you won't be disapointed!!!
    Hugs from ~Thea~ in Wisconsin!!!!